I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: miket on April 17, 2011, 08:49:21 AM
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So the other day I was in a care conference, I am sure you have all been there. If not, I'll clue you in, a care conference is where you show up and your dialysis nurse, nephrologist, dietitian, and social worker go over all the details of your blood work and answer any questions.
This time I went in there and my PD nurse went ape shit on me. First of all they haven't been giving me enough EPO so I am anemic, and well the only other thing that was wrong was my phosphorus was high. I've had a hard time trying to control this, I just turned 28 and have been on D for about a year.
Anyways I was telling them that I like to indulge in something that has salt added to it and thats when she lost it. She started breathing all crazy and was like, "you know Mike, if your transplant unit calls me and asks me how you are doing and they have a kidney for you, I am going to tell them not to do the transplant" and I was just thinking to myself whatever, I am not even close to transplant average time is 2.5 years. But I just find it so messed up that these people have no clue what I go through everyday to make sure I am alive, what restrictions I do every day to my diet, and how many bp meds I take everyday, how many damn tums I stomach after every meal.
It's just so messed up that you would even say that to a person that is waiting for his/her new lease on life. I'm not a non-compliant, just sometimes I like to do stuff that makes me feel normal. These people have no idea what it feels like, they might be around it, but NONE of them have to deal with it like US the PATIENTS do.
-Mike
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I totally agree with you there, Mike. :thumbup; You nailed it on the head :thumbup; It's very frustrating.
I see a team of doctors, a different doctor every month. One raves about my blood lab results and others have a big problem with it. I understand your frustration. I'm going through the same thing in reference to my phospohorus levels. One month I get told I'm doing great and another month I get in shit. You are so right about that they have no idea what its like to have such a restricted diet. Unless a person has been through it his/herself, I really don't think anybody can understand.
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I agree with both of you. When I was on PD it was a fight to see the same doctor two months in a row. There were 7-8 nurses and you always got a different one. I will say, however, that no doctor or nurse ever treated me the way this one did to you. I can't think of a single patient who doesn't indulge once in a while. I co-run a renal support group, and one of the things we teach them is the best time to cheat on your diet - immediately after your blood test. The renal diet is boring enough without spicing it up once in a while with a little salt, some cheese or even ice cream. I think the nurse was definitely out of line.
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I think your pd nurse was out of line too! I must admit also, I've never had a nurse or doctor treat me like that either.
I do cheat a little after my monthly bloodwork. I try not to, closer to my labs. Rather than having my usual cheeseball at Easter this coming weekend, I'm going to hold off and have a little cheeseball after my monthly blood test, on the first tuesday of next month. ;D
BTW, I forgot to mention, I'm doing hemodialysis at the hospital, I'm not on PD, but I really have my frustrations seeing a different doc every month. There is no consistency and it can be very confusing. :rant;
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Mike - from now on I would not admit to or divuldge information on anything that could be construed as "non-compliant"...
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What a jerk thing for the nurse to say!!! Does she know that basically it not so many words she is condeming you to a shorter life span? OMG this makes my blood boil!!! File a complaint about this nurse!!!
xo,
R
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I agree with all comments above! Your nurse was out of line, you should file a report about it, and in the future, I wouldn't tell them anything about "cheating" a little. They are going to assume that you do cheat if your labs are not normal, whether you really are cheating or not.
I've also had issue with my phos being high. I really have been trying to keep it in check and watching what I eat (far more than I used to) but it is still just above the normal level. I especially try to watch it just before lab days, but I've found that my center just draws labs whenever they want. They are supposed to draw the first Monday of the month, but in March they drew the first Monday, then again on the third Monday. The nurse said that she was drawing monthly labs. I was confused! So now, I just watch what i eat especially careful over the weekends. I never know when they are going to draw labs on me!
Don't let the nurse get to you. If you file a report, nothing may ever come of it, but at least you will feel better about it. Karma will come back on her and she will get what's coming to her for being so rude.
Good Luck :2thumbsup;
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I agree with the others!
Just want to add that I doubt that this nurse has nearly as much power as she seems to think she has! In my case my dialysis center has NO CLUE and no communication with my transplant center. It's so frustrating when they treat us like misbehaving children... My nurses never threaten noncompliance reports, but they threaten hemo (I'm on PD) every time I get peritonitis. You see it's my fault :sarcasm; and if I don't do it right then I may have to switch to hemo (which they know I really fear).
Hang in there. Do your best and forgive yourself the rest!!!!! :flower;
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She started breathing all crazy and was like, "you know Mike, if your transplant unit calls me and asks me how you are doing and they have a kidney for you, I am going to tell them not to do the transplant"
Wow. Who does she think she is ... God? As the others have said, don't admit to *anything* ... ;D
*huggles* for you.
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MikeT
I can identify with your situation and appreciate what your feeling. During my time on dialysis it was the nurse/manager of the clinic who made my life miserable both because I had a permacath because I was close to tx with my living donor and because my phosphorus was always high. The manager insisted I get a fistula because I was risking the clinic's record of no infections in 9 mos and I refused and I insisted I was following the diet and not eating anything on the phosphorus forbidden list. Fortunately for me I had a regular neph before dialysis and now after transplant who is the best doctor I have had in my life. Her Clinic provided the nephs for this dialysis clinic but she didn't go there herself. After my wife told her what was going on she went to the manager and had a talk with her. The first thing the manager said was "he thinks he's getting a transplant but I hear that all the time and he's obviously not following the diet because his phosphorus is always high. My neph replied " He is getting a transplant and the permacath is good for six mos. Also during the year I treated him pre-dialysis he was one of the most compliant patients I've worked with so stop bugging him. All food has phosphorus in it so it doesn't mean he's cheating." The manager never spoke to me again. When my transplant date was set she was the only tech or nurse or doctor involved with the clinic who didn't congratulate me and most had tears in their eyes. I went back 6 mos post tx and the manager was gone and the whole atmosphere of the clinic had changed dramatically.
I definitely agree you should complain. Somewhere out there is an advocate who can help put a stop to whats been happening to you.
Best of luck
Ed
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Thanks everyone for the wonderful feedback about a not-so-wonderful topic. I feel better knowing she was in the wrong. I will just keep my head up and keep trucking along. None of us want to deal with this but I applaud all of you that do what I have to do everyday. We took over the job of what our bodies used to do on it's own, which is balance itself, but little did our bodies know that we also have everyday things that we balance, such as life. Keep your heads up and lets stick together!
-Mike
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we've gotten to a point in our house that non-compliant is a dirty word. It's not said in this house, and if it's said by a nurse or doctor in front of my mother, look out.
When I was 15, my mother was told that missing a clinic appointment was considered non-compliance. This was said during a phone call to inform them that we wouldn't be able to make it. There happened to be a major snowstorm going on at the time. We live on an island, and at the time, the only way off the island was by ferry. Obviously, in a storm, they're not going anywhere.
For whoever said that they're threatened with Hemo every time they get peritonitis, that's not lip service. I had 3 bouts of peritonitis, 2 small, and one big that nearly killed me. The 2 small bouts were about a month apart, the second I was hospitalized and treated like convict, because they believed that it was me who caused the infection, and that I did it deliberately for attention. They also believe that I caused the failure of my two transplants deliberately, again, for attention, but that's another story. My peritonitis was caused by a PD nurse who didn't follow procedure when changing the extension tubing on my catheter. When she was finished changing the tubing, it came apart from the catheter, and instead of starting over and putting a new tubing on, she just tightened the tubing, and left it. I didn't know any different, so when it came loose on me, I just tightened it again, like the nurse did. Eventually, it fell right off, and I finally got a new tubing put on, but at that point, it was too late. The 3rd infection was a fungal infection, which I was told was caused by the other 2 infections, though I'm not sure how that works. That one nearly killed me. The pain from it was complete agony. I couldn't be dialyzed because the pain of draining and filling was so great. After 3 days of trying to dialyze me, they gave up. They took out my catheter, put in a central line, and I've been on hemo ever since. They did try to put in another catheter about 6 months later, but I was told that the scarring from the infection was too great, and PD was no longer a viable option for me.
That nurse works at the dialysis unit I go to now. She's one of 3 who do the PD visits once a week. She has never acknowledged her mistake, nor apologized. I'm not sure if she was even made aware that it was her fault. I'm not allowed to request that she not needle me, and I'm very uncomfortable with her touching me, so when by luck of the draw I get her as my nurse, I try not to cringe when she does touch me.